I’m not feeling like myself today and this post probably isn’t going to be like my usual posts either.
Most of the time, I feel able to fight this disease and everything it throws at me. I try to think positively, to make the best of what I’ve got, to look forward to a future that is not ideal but is mine. Most of the time, I feel like I have managed to adjust to living with a chronic illness; to the highs and lows of the rollercoaster and the hurdles it throws in my way. Most of the time, I can honestly say I am happy too.
Today is not one of those times. Today I feel like I’m carrying a huge weight right next to my heart and my mind is racing. I feel alienated from everything that is going on around me. I’m emotional and restless, unsure what the hell to do with myself. I’m not even confident which way is up right now.
I guess the cause of all this is being faced with Chemotherapy and Stem Cell Therapy / Bone Marrow Transplant. It’s nearly two weeks since it was first mentioned and I held it together pretty well for a while, but suddenly I feel overwhelmed. I’ve been trying to get through the reading my Rheumatologist sent me by reading only a little bit at a time; firstly, because I want to understand it but also, because it is such a difficult read emotionally. Which would explain why each time I have read some, that weight in my chest has got a little heavier. Yet, it needs to be done. I need to at least have the knowledge to help me make a decision, so what choice do I have?
I honestly can’t believe that it has come to this and really don’t know how I am going to make the decision. There are so many related issues and things to consider. There isn’t just me now, there’s my fiance’s future in the balance too. We still haven’t given up on having a family one day, but then how does that fit it with this? Chemotherapy will probably make me infertile and so we’d have to look into fertility treatment to preserve embryos beforehand and then face the horrendous process of IVF afterwards. Or there’s a small chance we’d be advised to try naturally first, but wouldn’t that make the decision to go ahead even more difficult as a mother? What if something happened to me? People do die from this treatment. Then I’m supposed to be getting married in a couple of years time and suddenly I’m scared of arranging anything. I want to travel, but do I do that now ‘just in case’?
My thoughts go on and on in circles like this, with more and more questions arising with each point.
It may sound like I’m focussing on the morbid but those are the things that are hard to get my head round and the risks feel very real to me right now. I want to talk to somebody about how I feel but I’m actually worried about scaring my family, my friends and especially my fiance too much. I can’t even bring myself to discuss what I’ve read so far with him because the fear in his eyes at the mere mention of it is too much. I’ve asked my GP if there is a counsellor or anything I can access but he says this is ‘too big’ for them, that the appropriate counselling will be offered to me at Sheffield. But I kinda feel like I need someone now.
I know things will be put into place in due course and that I might be getting ahead of myself, but from the moment this option was voiced my mind has been racing. How can it not? It is very difficult to think about anything else right now.
I also know that the outcome of this procedure could be very positive; don’t worry, I haven’t forgotten that, it’s just not why I’m posting today.
I’m posting because I’m tired of being brave. I’m scared and for the first time I feel very, very alone.